Countless movies, sitcoms, books, and even everyday situations showcase the power of love and family. When facing a cancer diagnosis, support from loved ones is a vital asset in a patient’s care. Many family members take on a very active role in their loved one’s care and become their caregiver. Of the estimated 2.8 million caregivers caring for someone with cancer, 88% have stepped into the role for a family member.
Caregivers take on a great deal of responsibility, and acting as an advocate for the patient is just one facet of the job. Being an advocate can mean acting as another set of eyes and ears for the patient, understanding their diagnosis and treatment options, and speaking up to ensure they receive the best care possible. As their advocate, you allow the patient’s voice to be heard.
Taking on these roles can be extremely challenging, as you grapple with understanding your loved one’s health needs, finding the best ways to work with their medical team or even deciphering what treatment expenses their insurance will cover. Fortunately, there are some simple ways to help prepare and face these trying tasks more easily.
Research & Ask Questions
When acting as an advocate, there is a whirlwind of information to digest. Taking the time to make sure you understand the information, whether it’s what a treatment plan entails or if insurance will cover the costs of a particular clinical trial, will alleviate stress all around.
In the Cancer Support Community’s 2017 Caregiver Specialty Registry Report that surveyed 220 caregivers across the country, 72% of participants said they wanted help understanding a patient’s medical condition and treatment options. Especially considering many family members take on this responsibility with no formal training, research and connecting with the medical team are the first steps to feeling more qualified as your loved one’s advocate.
Research on your own: Take the time to research the diagnosis and available treatment options yourself. As you learn what you can, make a list of any questions you may have for your loved one and their medical team. Putting in the effort on your own will allow you to familiarize yourself with common medical terms associated with the disease and feel more prepared for talking to the medical staff, which will break down communication barriers and make it easier to get the answers you seek.
Ask the patient: Even if you’re communicating on the patient’s behalf or working to help them better understand their treatment options, they are a source of expert information. They can tell you firsthand any side effects they’re experiencing, concerns they might have about a particular treatment, and their thoughts on the best options for their care.
Seek the experts: As your loved one’s advocate, you are essentially part of the care team already. Befriending the medical staff and feeling comfortable speaking with them about the patient’s care will ensure you’re all on the same page about the best possible care. It will also be beneficial to speak with the patient’s insurance company with any questions you have about coverage or any received medical bills to avoid any surprise costs later.
While researching and seeking help from the medical staff, keep in mind some of the future obstacles you may face and need assistance with. For example, for rarer cancers like mesothelioma, patients often have to travel farther from home to find a cancer clinic that specializes in the care they need. Also, if patients are considering joining a clinical trial, they may have to travel to a different medical institute to receive the treatment being studied.
Being prepared with additional resources for secondary costs like travel and lodging can ease some future burdens.
Pay Attention to the Little Details
According to the Cancer Support Community’s survey of caregivers, 73% of caregivers are heavily involved in a patient’s treatment decision, with 47% of the 220 caregivers actively making the decision with the patient. With such an important role, caregivers need to actively engage and learn about the patient’s current condition and prognosis, and the potential outcomes of different treatments. Along with continued research and seeking answers from the medical team on a regular basis, you’ll need to be proactive in listening to and observing the patient.
Being a good listener is arguably one of the most important traits to have as a caregiver. To be able to properly advocate for a patient, you have to be able to listen and understand their needs. If you’re interacting with the medical staff on their behalf, you’ll need to be able to communicate what the patient is going through and what questions they have.
Keeping a detailed record of what the patient is experiencing before and during treatment can help the medical team and the patient make informed care decisions. Working with the patient so closely will put you in a good position to observe what a doctor will not be able to see on a daily basis. Even if it seems obvious, like noting the patient has less energy after their most recent radiation session compared to the previous session, it can help the doctor manage side effects or tweak a treatment plan for the better.
Oftentimes, doctors will not see a patient for several weeks between appointments, and a lot in their health can change in that timeframe. Staying on top of any large or small changes in a patient’s condition will ultimately give them a better quality of life. Being prepared for appointments with doctors with information like this, as well as having any scans, medication and dosage schedules on hand, will make the appointment productive and beneficial for everyone.
Empower Yourself and Your Loved One
As a patient advocate, it’s also extremely important to find your voice. You’re an essential asset for a loved one in one of the most vulnerable and scary positions in life. If you’re communicating on their behalf or taking such an active role in determining their care, you have to be prepared to speak up.
It takes courage to question a doctor if a particular procedure is necessary or to say something if you and your loved one believe another treatment option might be a better fit. But asking hard questions and putting any lingering doubts into the open will create a better a line of communication and understanding. Ultimately, everyone’s on the same team and wants what’s best for the patient’s health.
Even if you’re handling a lot of the communication for the patient, encourage them to speak up for themselves as well. No one will understand what they are going through better than them, and they shouldn’t be afraid to discuss any pain, side effects, or questions with their care team when they are able. By being their support system and validating their experience, you will help them be an active participant in their care.
Being an advocate is not an easy journey. But the difference you’ll make in your loved one’s cancer journey will make every hard day worth the effort.